The ELAROS NHS digital system for patient/clinician digital sharing questionnaire data, includes Yorkshire Rehab. Scale and Open-OH app

[Maat]

Eleros essentially operational during the NHSE Covid flush of money and LC Serviced via MEA Sarah Tyson PROMs etc, (then leads to Delivery plan and BACME involvement) ...have been heavily 'marketing' their wares, talking up their product and expertise and then transposing across to ME and CFS, as the covid acute need reduces...

and every one then queues up for the so called ME and CFS Services.. within the new shiny Integration' 10 yr Plan, Digital AI and rehab agenda.
NICE!
.

Yes agreed.

But this now also includes severe ME/CFS patients without any research evidence at all for safety or effectiveness except the FINE trial! Sister trial to PACE.

They've only just removed the activity and exercise in the last week because of 'feedback'.

They've been caught out. Remember that the final delivery plan announced the NIHR HERITAGE programme which will look into cost effectiveness of 'existing services'. By the time that's up and running this will be the existing service for ME/CFS and a National Service Framework and educational materials. Policy. It solves the arguments over using NICE ng206 and also explains why eLearning is not mandatory.

 

[MrMagoo]

Yes agreed.

But this now also includes severe ME/CFS patients without any research evidence at all for safety or effectiveness except the FINE trial! Sister trial to PACE.

They've only just removed the activity and exercise in the last week because of 'feedback'.

They've been caught out. Remember that the final delivery plan announced the NIHR HERITAGE programme which will look into cost effectiveness of 'existing services'. By the time that's up and running this will be the existing service for ME/CFS and a National Service Framework and educational materials. Policy. It solves the arguments over using NICE ng206 and also explains why eLearning is not mandatory.

This is worse than just us. Obviously as per usual, it’s worst for us and those of us who are severe/very severe.

This has been in the background whilst they were trying to cut PIP and merge it with LCWRA. We need to go to Benefits and Work, Crips against Cuts etc

 

[Maat]

This is worse than just us. Obviously as per usual, it’s worst for us and those of us who are severe/very severe.

This has been in the background whilst they were trying to cut PIP and merge it with LCWRA. We need to go to Benefits and Work, Crips against Cuts etc

Yes. DPAC should also know. I don't have the spare capacity for this though.

 

[Suffolkres]

We knew there was something, well sleuthed!
We need to tell activists.

It would appear from MELN and those with involvement with ME 'Non' Delivery Plan .....

that 'someone' within DHSC Delivery Plan gtoyp .. has 'suggested and has made 'overtures' and has helped prearrange for Eleros to met with some Forward ME attendees and nembers soon....?

If this is for Forward ME work on Apps to be considered for PWME, especially SAs, surely it should invite involve a wide range of providers and so proper consideration evaluation can take place?

Probity and marketing /anti competitive protocols and Forward ME governance...?

MEA flagged this wonderful opportunity to that Beta OH...... endorsed by well meaning but new local support groups for LC. .....
MEA, while not allegedly, suggesting support.. ...
MEA should not be facilitating private companies and their business model and their apps IMHO
Too right I say!
Or have I really now lost the plot?
Am I becoming a conspiracy theorist?